An Edmonds Kind of Dad: What it’s like raising a 5-year-old with autism (part 2)

In an earlier post, I wrote about some of the special challenges that go into raising a son with autism and focused on the diet, supplement and vitamin protocol we’re following to try to help Stone’s developmental issues.

There is another aspect of raising a child with autism that has more of an impact and that is of course behavioral issues.

Not surprisingly, Stone is developmentally delayed in numerous areas, many of which relate to speech, communication and social issues. He’s not officially totally non-verbal; there are words he can say (and tries to say) but his vocabulary is limited. And when he does speak, he can be difficult to understand at times if you’re not used to listening to him. But he’s trying and every so often surprises us by saying something new.

This morning was one of those occasions when he pointed to the TV (Little Einsteins, of course) and said “star” and “flower” — correctly identifying the objects on the screen. I have no doubt that Stone is totally aware of his limitations here and that awareness makes him reluctant to try to speak more frequently. I’m sure he is self-conscious as he hears Ty (and others) talk all the time and he knows he can’t do the same — and when he talks I’m sure it also sounds as different to him as it does us. But we’re going to keep encouraging him and fortunately he has a no-quit personality so I know he’s going to keep on trying and will get there.

Stone has a very busy therapy schedule. He’s currently in Developmental Kindergarten at a separate school from Ty. His class is much smaller than other kindergartens, which allows teachers and aides to be able to spend more time and attention with him. He has extended days twice a week — which in this case means an extra 90 minutes of instruction (and an opportunity to eat lunch at school with his classmates). He is also receiving ABA therapy twice a week for two hours each day. He has a great tutor who works with him 1:1 on a number of goals. Because ABA focuses specifically on behavior, we have a range of areas we’re trying to address, such as trying to get Stone to sit at the table during a meal (he tends to get up and walk around) and use a fork or spoon appropriately with his food (he still prefers fingers).

We’re also trying to get him interested in books again. There was a time when Stone was a baby when I would read to him and he loved it – and would especially respond whenever he saw the balloon in “Goodnight Moon.” But that interest disappeared as quickly as his early speech development and for the most part he has had zero interest in books for the past three years. If you tried to sit down and read a book to him (or just show him the pages) he would either walk away or take the book and toss it aside.

This has been very sad and hard for me to see because I know how important books can be in development — not to mention the special bonding time you get to share when you read to your child. But again, we have seen changes here. Last weekend he sat down with a pile of books and flipped through the pages – sometimes fast, sometimes slow – but the interest was clearly there (especially with the counting books). I think this is a direct result of the ABA therapy as this is one of the top goals we identified as a priority and it’s been part of his regular sessions.

Sometimes it’s easy to get hung up on the many things Stone can’t quite do yet when compared to a neurotypical child. And I think this is sometimes even more profound because he has a twin brother who is exceptionally gifted in so many areas. I wish so very much that Stone could enjoy and experience the fun and joy that comes from playing with other friends. Ty takes great pleasure in playing with other kids (as do most 5-6 year olds). But Stone still pretty much stays in his own world and doesn’t choose to interact or play with other kids. My guess is this bothers me more than it does him because he seems to be genuinely happy most of the time.

I also look forward to the time when he can engage in more formal level of play (or sports). While we can sit down and play a game with Ty (his ultra-competitive spirit aside), we can’t do the same with Stone — and I don’t know how long it will take until we get to experience that with him, too.

As I mentioned, Stone is basically a very happy boy and it often doesn’t take much for him to see or do something that makes him even more happy and/or excited. When he was a toddler and he got excited, he often performed what we called was his “happy dance” — lots of jumping and walking around on his toes. This is pretty common for kids on the spectrum I guess — and he still does it (although now he mixes in lots of screaming, jumping and running around if he’s *super* happy and excited). I think it’s fun to watch because I love seeing him so happy — but its something that has caused other parents and kids at playgrounds to look at Stone differently. Nobody has every said anything, but it’s a look I’ve gotten used to over the years.

Sensory input is huge with Stone, so he’s always seeking it in some way, shape or form. It’s one reason why he is almost always eating or snacking. He loves frozen bananas and blueberries. Sometimes he’ll peel off the skin from a blueberry and see how high he can throw the berries and skins (our ceilings are proof he can chuck them pretty high). Unfortunately, he loves and craves foods with lots of sugar (cookies, cereal, fruit roll ups, fruit, etc.). This has an impact on his body (yeast production, etc) and also obviously revs him up even more (as if he needs more energy).

When he’s riding in the car he now likes to have his window down so he can stick out his hand and arm outside to feel the wind racing against it. He’s also managed to stick his head completely outside in full dog impersonation mode on a couple of occasions (before we noticed and told him to get back in the car). He hates wearing shoes and socks so he usually goes barefoot around the house — and usually out in the garage or backyard (even in wet, 45-degree weather).

And of course there is the visual sensory he craves – his beloved Little Einsteins videos. For nearly four years now, the Little Einsteins have been his best friends and companions. He simply loves the program and has no interest in any other children’s show or cartoon. It has gotten to the point in the past when we cut him off from watching all Little Einsteins shows because he was spending too much time immersed in them. And when we stopped the shows, we did see an improvement in his development. But this summer he was reintroduced to them again and again, got hooked (or addicted) to the shows. So we’re again trying to cut them out of his life and again, we’re seeing an immediate change. When he knows he can’t watch the videos he is much more resourceful entertaining himself whether its with blocks, cars or even books (as mentioned earlier).

Earlier this year I wrote about how important it was to me for Stone to take swimming lessons and to learn how to swim. And while he still can’t fully swim on his own, he has made tremendous progress. Hany our au pair takes him to the pool two to three times each week (because Ty’s school goes so much later) and she reports that Stone no longer wants to use the “noodle” to help float while he kicks. He’s steadily getting closer and closer to being a full blown swimmer – and that is very encouraging.

He also has expressed an interest in the bicycle for the past couple of months so we’ve been spending a little more time trying to get him used to the concept of sitting on the seat, steering and moving forward. I learned of a technique used by a school that teaches kids how to ride bikes where they actually remove the pedals from the bike, so the kids can first get used to straddling the bike and learning to balance by walking with it. I had my first mini-session with Stone using that technique tonight and it went pretty well — I can see how he is slowly learning the concept of balance. I think with a lot more practice he will get the hang of this and will be able to ride a bike along with Ty.

One area Stone really excels and continues to improve is in taking direction. He can (and does) follow fairly complex instructions when asked. So its clear that his comprehension is high (which is good).

So as is the case with raising any child, there are always plenty of challenges and no lack of excitement when it comes to dealing with Stone and all that comes with him being on the spectrum. And I know that the challenges and issues will never go away – they’ll just evolve and change as he gets older. But I also know that as his development continues to progress over time, the challenges will change from those related to him being on the spectrum to those simply related to him being a growing boy (like Ty).

David Kaufer is a fun-loving Super Dad of 5-year-old twin sons, an insane Oregon Ducks fanatic (follow him on Twitter @DavidKaufer), advocate for green/sustainability and autism issues, and connoisseur of Northwest microbrews. He and his wife Renee moved to Edmonds in 2005 to raise their family (and enjoy the gorgeous views).

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